It's All In Your Mind
After weeks of severe behaviors, Paul and I have a bit of PTSD. Every outbreak of behavior seems to trigger the feeling of "OMG, here we go again." A couple days of screaming and biting (admittedly hours every day, but still not as bad as the end of December/first several weeks of January) and we were ready to call the doctor about more meds. Today is a little better.
Hell, I was in a store a week ago and heard a child scream and broke out in a cold sweat. I almost started running to him. It wasn't my child. I was there alone. We are still in reaction mode, control mode.
But still, in relative terms this week is not so bad (although no one who doesn't have a challenging child would see it this way.)
But both my husband and I are still on edge. Waiting for the other shoe to drop. Not wanting to do what we did last time, and progress beyond the first levels of autism/bipolar hell before we do something, anything.
So when this started two days ago, we immediately started asking "Do we need to email the doctor? What is the next step? Boy, I don't want to do that monthly bloodwork those meds will require!" And, now, today...better. Not perfect. But better.
So, why did we overreact? Well, because of recent experience. We SO do not want to return to that. We are not trying to make our lives perfect, or easy. Honestly, I do not really expect my life to be easy ever again. I just don't want to explore the levels of hell beyond the ones we've seen. And, frankly, where we were early in January? Well it's not good for living, and I wouldn't want to vacation there. Never again. But I know we will.
But this is suffering in Buddhist terms. Taking a situation, and projecting our fears onto it to make ourselves miserable. Not by intent. But by failing to set intent to live in the present. The Buddha said pain is inevitable. Everybody's life has physical pain and loss. But when we worry about our loss or pain, worry about what others think about, when we worry about what the future holds, when we look into the future and say "If this never changes, our lives will be...." That is suffering.
Another cause of suffering is imagining that things are permanent. That we can keep things the same or we hold onto an 'ideal.' My life would be perfect if my kids were different. If he didn't have autism. If Nathan didn't have hours long/daylong/week long meltdowns. When we hold onto an ideal, "The perfect child should do X" in spite of the fact that our child has not reached the developmental capacity or just absolutely HATES X, we create suffering. If you think Christmas would be perfect if just everyone would Y, but no one in your family has ever shown the capacity or willingness to do Y. That's suffering.
So, yeah, we were suffering. Do our lives suck? Sure, sometimes. Pain is inevitable. But by recognizing what our minds are doing, getting stuck in negative patterns, not living in the present, we become more open to the joy that is present in every day. We are more aware of the little gifts that occur in the midst of pain. "Wow, in spite of screaming himself hoarse and biting himself bloody, he was able to tell me that he wanted me to hug him."
It is a constant, ongoing effort. But well worth it. Because I don't need to create more pain in my life, and I doubt that most people do. I need to find the joy that is there for the taking. I need to be living in the moment to see myself and my children as we are. Not as I fear they might be and not as I wish they would be.
Hell, I was in a store a week ago and heard a child scream and broke out in a cold sweat. I almost started running to him. It wasn't my child. I was there alone. We are still in reaction mode, control mode.
But still, in relative terms this week is not so bad (although no one who doesn't have a challenging child would see it this way.)
But both my husband and I are still on edge. Waiting for the other shoe to drop. Not wanting to do what we did last time, and progress beyond the first levels of autism/bipolar hell before we do something, anything.
So when this started two days ago, we immediately started asking "Do we need to email the doctor? What is the next step? Boy, I don't want to do that monthly bloodwork those meds will require!" And, now, today...better. Not perfect. But better.
So, why did we overreact? Well, because of recent experience. We SO do not want to return to that. We are not trying to make our lives perfect, or easy. Honestly, I do not really expect my life to be easy ever again. I just don't want to explore the levels of hell beyond the ones we've seen. And, frankly, where we were early in January? Well it's not good for living, and I wouldn't want to vacation there. Never again. But I know we will.
But this is suffering in Buddhist terms. Taking a situation, and projecting our fears onto it to make ourselves miserable. Not by intent. But by failing to set intent to live in the present. The Buddha said pain is inevitable. Everybody's life has physical pain and loss. But when we worry about our loss or pain, worry about what others think about, when we worry about what the future holds, when we look into the future and say "If this never changes, our lives will be...." That is suffering.
Another cause of suffering is imagining that things are permanent. That we can keep things the same or we hold onto an 'ideal.' My life would be perfect if my kids were different. If he didn't have autism. If Nathan didn't have hours long/daylong/week long meltdowns. When we hold onto an ideal, "The perfect child should do X" in spite of the fact that our child has not reached the developmental capacity or just absolutely HATES X, we create suffering. If you think Christmas would be perfect if just everyone would Y, but no one in your family has ever shown the capacity or willingness to do Y. That's suffering.
So, yeah, we were suffering. Do our lives suck? Sure, sometimes. Pain is inevitable. But by recognizing what our minds are doing, getting stuck in negative patterns, not living in the present, we become more open to the joy that is present in every day. We are more aware of the little gifts that occur in the midst of pain. "Wow, in spite of screaming himself hoarse and biting himself bloody, he was able to tell me that he wanted me to hug him."
It is a constant, ongoing effort. But well worth it. Because I don't need to create more pain in my life, and I doubt that most people do. I need to find the joy that is there for the taking. I need to be living in the moment to see myself and my children as we are. Not as I fear they might be and not as I wish they would be.
Thank you for sharing, I found your post very interesting. I don't know much about Buddha, although I like the sound of it. I am sorry to be nosy... what causes your son to have his meltdowns? When you said he needed a hug.... was he looking for deep pressure in order to calm down? Hope you don't mind me asking questions! :)
ReplyDeleteHi Di. Nathan has been recently diagnosed as having Bipolar Phenotype Autism. This means he cycles in and out of extreme irritability alternating with days of relative calm. This cycling has been going on for a long time, but has worsened recently. I got some books on childhood bipolar, and this definitely sounds like him. Also Donna Williams talks about being autistic and bipolar on her website. http://www.donnawilliams.net/childhoodbipolar.0.html
ReplyDeleteThere is no recognized diagnosis of bipolar phenotype autism, but his autism is so much different from his brother's. Bipolar does run in my family. So we feel this is a definite complication/addition to his autism.
For him, the meltdowns come from inside. They are much different from his 'task avoidance' outbursts. A therapist once said he seemed depressed by his lack of control. And he does seem like there is no controlling himself. No matter what we try. For hours and days he screams, bites himself until he is bruised and bloody. Up to 17 hours a day.
we are still trying to figure out how to best help him. It seems this will have to be pharmacologic help rather than behavioral, because we and many other people have tried multiple behavioral methods and they don't help.
I've never heard of bipolar phenotype autism but it sounds very like Chrissy. Will check it out on the net & show her doctors. There is massive cycling in her moods with no identifiable trigger. Also, meltdowns 'coming from inside.' What a great way of putting it. Chrissy was transformed by the drug Naltrexone prescribed with Prozac. Sadly, they had to be withdrawn after about 5 years because her platelets dropped dangerously low. She's now back on Prozac but it's thought that the combo caused the platelet drop so her doctors won't risk Naltrexone again. Heartbreaking as it gave her so much relief from the self-injurious outbursts but also nearly killed her. How old is Nathan?
ReplyDeleteWe just started Depakote. I don't know what it is, but it seems like whenever we start a med, it works at first and things improve for a few days. It SHOULDN'T be working yet, so we don't know why he seems better. But whatever! I'll take a few good days for whatever reason.
Delete